Chest pain: I ran out of NDT in November and was... - Thyroid UK

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Chest pain

Mandcol profile image
19 Replies

I ran out of NDT in November and was unable to obtain anymore. My GP referred me to an endo which took 2 months before I got a call and in the meantime I was left without meds. Endo put me on 100mg of levo and 20mg of t3. I started with chest pain and because I have had this before with levo he took me off levo and put me on 40mg of t3. I have had heart scans but the hospital say there is nothing wrong with my heart. The chest pains continue. Has anyone else had this problem? I am really hoping it goes once my thyroid is balanced. Thanks in advance to all you lovely people who have helped me in the past.

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Mandcol profile image
Mandcol
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19 Replies
jsy_girl profile image
jsy_girl

I’m not sure I’m a helpful contributor to this post but since trying to introduce t3 I get really tight chest. Wouldn’t describe it as pain though. Just discomfort. I’ve lowered my dose which helped and now trying to increase slowly.

As I said, not sure that helps!

Mandcol profile image
Mandcol in reply to jsy_girl

Many thanks for your reply, I am going to lower my dose and increase slowly and hope this sorts things out. Wishing you good health.

jsy_girl profile image
jsy_girl in reply to Mandcol

No problem. I’ve scoured this forum for information on chest tightness and there is very little mention of it, that or the search function isn’t very good ha ha, but I have read a lot that t3 must be introduced very slowly and it seems low iron and problems with cortisol also affect it. I have low iron and am getting cortisol tested. I seem to be very sensitive and now taking a ridiculously tiny amount but I am reassured by people explaining to only increase dose every 2 weeks so that is what I am doing now. I almost gave up on Wednesday but finally yesterday I had a morning with no chest tightness so I do think slow and steady wins the race on this one. I also seem to get more symptoms in the evening so I’m trying with slightly more of my dose in the morning than evening.

Mandcol profile image
Mandcol in reply to jsy_girl

I am glad your chest tightness has gone, mine ranges from pain to tightness . It must be the t3 as I had no problems at all for nearly 5 years on NDT. Fingers crossed lowering the dose and increasing slowly will work. I can put up with most of the annoying problems I get from being hypo but chest pain is worrying. This site is such a help as I don’t feel alone with the problems have. I think hubby is sick of hearing me moan !! Thanks for your replies and stay well.

jsy_girl profile image
jsy_girl in reply to Mandcol

Yes absolutely it really worries me too. It hasn’t entirely gone but it’s better and I can imagine if I took a really large dose tightness would go to pain. Do you know what your ferritin levels are?

I shall keep in mind that NDT could suit me better if I can’t resolve this situation.

I’m on my own so having this forum is a god send. My friends probably think I’m a hypochondriac. Ha ha.

Mandcol profile image
Mandcol in reply to jsy_girl

It must be hard when you’re on your own. I feel as if my friends and family don’t really understand it as I look fairly well, maybe just slightly fatter and tired! This forum truly is a god send. I found NDT worked so well for me, it’s just the problems of sourcing it, it’s like the black market ! There are always people on here who can help you and they are definitely more knowledgeable than the gps or even the endos. Don’t hesitate to message if you need help or just an ear to listen x

jsy_girl profile image
jsy_girl in reply to Mandcol

Many thanks. I may end up in touch about NDT if I can’t ever get this to work but whilst I’m getting a prescription feel like I better give it a good go!!! I would be really interested to see whether your symptoms subside. I might give you a follow if that’s okay

Mandcol profile image
Mandcol in reply to jsy_girl

Yes that’s fine.

Mandcol profile image
Mandcol

I was taking 3 grains of Thiroid, I felt so well for nearly 5 years. I have been given a contact for thyroid S from a kind member of this site and it is on the way to me. I was hoping the endo could sort things out so that I no longer had the worry of sourcing NDT. I am thinking of lowering the T3 and working up more slowly as if this works for me it will mean I no longer have to worry about getting meds. If not I will take the thyroid S and hope it works as well as Thiroid for me. Many thanks for your reply.

Mandcol profile image
Mandcol

That’s good to know as if the t3 on it’s own doesn’t work hopefully I will get my health back with the thyroid S. I’m not sure how much more moaning and sleeping my husband can take from me!! It makes me so mad that the NHS won’t give me NDT when it keeps me well. The endo told me I clearly needed it so he could give me a private prescription for it, it’s cheaper for me to buy it myself. It’s crazy, diabetics don’t have to buy their own insulin. Moan over! Thanks again for your reply and I hope you are in good health, thyroid issues are a nightmare x

nellie237 profile image
nellie237 in reply to Mandcol

Diabetics use synthetic insulin

helvella profile image
helvellaAdministratorThyroid UK in reply to nellie237

Some diabetics would appear to get porcine insulin products:

Hypurin Porcine from Wockhardt.

nellie237 profile image
nellie237 in reply to helvella

There will be many hoops to jump through

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin D, folate, ferritin and B12

Being left without medication will have caused dramatic drop in vitamin levels

Low iron and ferritin can take months and months to recover

Low iron or ferritin often causes tight chest or chest pain

40mcg T3 is not likely high enough dose if on T3 only

Do you split your T3 into 3 doses.....

20mcg waking, 10mcg 3pm and 10mcg 11pm

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Mandcol profile image
Mandcol in reply to SlowDragon

I had my vitamin levels checked in December and my vit d , folate and b12 were low. I have been supplementing for all 3 since. I just had a look again at my results as I didn’t remember seeing my ferritin result. My result was 117 with a range 13-150. Do you think this is high enough and if not do I need to take iron tablets? Many thanks for your support.

humanbean profile image
humanbean

Low iron and ferritin gives me chest pain.

I treat and test my own iron and ferritin now, and although it took a while, once I improved my iron and ferritin dramatically my chest pain went away.

One thing I have found very strange is that US sources of information on low iron/ferritin mention chest pain as a symptom, but UK sources almost never do.

Compare the following, for example :

nhs.uk/conditions/iron-defi...

drugs.com/mcd/iron-deficien...

Unfortunately for me, the time I spent with severely low iron triggered tachycardia (fast heart rate), and I've never got rid of it permanently since. But at least it doesn't hurt any more.

If you want to test for iron deficiency you can do that with a private finger-prick test :

medichecks.com/iron-tests/i...

You can get 10% off the price with the discount code THYROIDUK10

thyroiduk.org/help-and-supp...

Mandcol profile image
Mandcol in reply to humanbean

Many thanks for your reply. I had my levels checked in December and I am taking folate , vit d and b12 as all were low. My ferritin result was 117 with range 13-150 so I thought this may be high enough. Thanks for your reply.

SlowDragon profile image
SlowDragonAdministrator in reply to Mandcol

You can have high ferritin and low iron

You might want to do full iron panel test

Mandcol profile image
Mandcol in reply to SlowDragon

Thanks for your advise I will do that. Determined to get back to my former self !

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